My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Thursday, October 2, 2014

on alert


Morgan is over 25 months old (actual) and still not walking but getting quite brave with her abilities...I am sure that most parents probably worry at this stage as their now "toddler" bumps their head on everything but I think we are overly paranoid due to the hydrocephalus.  I always try very hard not to overact to her falls and bumps but tonight I think was maybe a reminder again of how she is extra sensitive. 

On to why I am writing in the blog today...Morgan was playing as usual tonight and clearly I was not quick enough to react but she was cruising between the couch and the rock n play (Max's chair) and fell forward to the ground.  She barely bumped her forehead but it was a tragic fall as usual and in normal fashion I tried to explain to her that she was OK as she lay on the ground crying.  Then I noticed she was really not fine.  Her eyes rolled down, her scream turned to a painful whimper and suddenly her body limp and heavy on my shoulder as I picked her up.  Immediate panic as I assess the situation and wait a long ten minutes for Pat who is on his way home.  She was whimpering/whining, could barely keep her eyes open and gagging as if she was about to vomit (she never did but we sat by the sink for a few minutes).  We watched her and her reaction for about 20 minutes and debated what to do but then just as fast as her fall happened she seemed to recover and resumed right back to her usual self (walking behind her walker and signing something we can't understand).  Whew...another crisis averted- maybe time to buy her a helmet?  

I am curious if other hydrocephalus patients experience situations like this where their demeanor and actions swing drastically?  We are wondering maybe does she get extreme/debilitating headaches (caused by even a minor fall/bump) that might cause this sort of reaction.